Good idea Allison and I was thinking this morning that there are quite a few new members recently who may be unaware of their right to free prescriptions.
Basically, anyone diagnosed with cancer can get an exemption certificate from their GP which entitles them to free prescriptions. The exemption certificate lasts for 5 years. In addition, anyone undergoing treatment for cancer or treatment for the side effects of cancer treatment is also entitled to an exemption certificate.
So it applies to
a) the newly diagnosed man
b) the man who is on active surveillance
c) the man who has opted for radical treatment
d) the man who is incontinent, has bowel problems or is having treatment for ED as a result of surgery or RT
e) the man with advanced disease and on hormone treatment, chemo, etc
f) the man with clinical depression as a result of diagnosis if he is being treated for the depression
g) the man in end stage
After 5 years, the man can apply for a renewal and as long as b, d, e, f or g apply he is likely to get another exemption certificate for another 5 years. The exception would be (c) as some lucky guy that has radical treatment, gets 5 years of undetectable PSA, isn't depressed, is continent and needs no Viagra or similar will no longer meet any of the criteria. If in the future he has a recurrence, he could then reapply at that point. We will be applying for John's to be renewed any time soon so we'll see how that goes!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
VAT Exemption Scheme:
If you are buying goods and services for a disabled person then some these may qualify for zero vat. A short form normally has to be completed confirming the patient's conditions, and a signed statement of truth.
More details here ... http://www.hmrc.gov.uk/vat/sectors/consumers/disabled.htm#2
In our own case, all the supplies bought for one of the bathroom conversion jobs were obtained under this scheme saving us about £1000 on the job. Not to be sneezed at!
Cath
User
Well
I filled in the form for attendance allowance, put in all that Tony has wrong, how many times he gets up in the night, all the hosp appts that I have to attend with him, his end stage renal disease (ckd5) put his chemo, all the tablets and so on and so on sent the form back after it had taken me a week to fill it all in and today found out he has actually got the higher rate of attendance allowance, could not believe it really thought they would turn him down again. happy days. thanks for all your help, made sure I filled it in about his worst days by keeping a diary for a week.
regard barbara xxx
User
Alan and I have benefitted enormously through the fully funded NHS Continuing Heathcare scheme. It is a package of care designed around both patient and carer. It is one benefit for which you are not able to apply personally .. the application form is divided into some 12 sections and completion is undertaken by District Nurses, Palliative Care Nurses, or Macmillan Nurses - as a general rule. Information is gathered from all members of your local care team .. plus the patient and carer.
Full details of the scheme can be found here on the NHS website ... http://www.nhs.uk/chq/Pages/2392.aspx?CategoryID=68
This benefit is totally different and separate from anything which may be offered via Social Services .. their services are generally means tested.
I can only tell you about the sort of help we get .. but it will give you a general idea. Alan has a nurse in 5 days a week to shower and dress him. I have 4 hours per week 'respite' with a 'care-sitter' staying with Alan, allowing me to get to the bank, shops, etc., for essentials. In view of my own limitations I have 2 hours per week help in the home (housework, etc). Two nights a week we have a 'sleep-in' carer who is responsible for Alan's needs between 10pm and 7am giving me a chance to have two nights a week undisturbed sleep. We were recently informed that Alan qualifes for 6 separate weeks per 12 month period to be cared for in a nursing/care home which is in the local area - a break for both of us every 8 weeks or so.
Assessment is officially every 12 weeks, I think, and is undertaken by Alan's PCN who sees him every three weeks, so she is always fully up to date with his needs.
Obviously the help we now get is very much appreciated and I hope this insight will be of help to others.
Cath
User
Age Uk will often help with the filling in of these forms. They have helped my parents and mother-in-law.
Paul
Stay Calm And Carry On. |
User
Council Tax Reduction:
If you need to carry out alterations to your house for the benefit of a disabled person, you can apply for a reduction in Council Tax. The criteria is that significant changes have to be made to a bathroom .. bedroom .. or kitchen to accommodate the needs of the disabled person.
In our case we had alterations made to two bathrooms to enlarge shower cubicle in one and remove a bath in favour of large shower cubicle in the other, so that a chair could be placed inside and there would still be enough room for a second person to help with the showering. A council representative will call and inspect the work. For us it resulted in our house being technically 'downgraded' from Band D to Band C for the length of Alan's life. They re-issue an ongoing confirmation form about every 12 months which has to be signed and returned. This is a financial gain to us of something just short of £200 per annum. Every little helps!
Cath
User
There is also carers allowance, this is payable to a primary carer if they look after someone for more than x hours a week (not sure of the current figure) It will not be paid if the carer earns more than about 100 pounds a week but this does not include pensions. There is no means testing of the person you care for. It is taxable.
Many of these sound more complex to apply for than they need to but Macmillan, Maggies and your local hospice will all have a specialist benefits helpline. Our Hospice did everything for me including rushing though his fast track forms for DLA and Motability so that he got them before his 65th birthday. Once a man is older than 65 he cannot qaulify for the same benefits. They also helped me to get everything I was entitled to in terms of widows benefits when Mick died.
Great Idea Allison
xxx
Mo
User
Brilliant Idea for a thread Allison, so many people need help and advice for how and where to go for financial help .When we were first diagnosed I was like a rabbit caught in the headlights , we had no idea that there was so much help out there but you need to know where to ask .
A good friend has health problems not PCA related but she has difficulty walking and with stairs etc she and her ex husband where in the RAF many years ago and the SAAFA have been brilliant fitting a stair lift and downstairs washroom so sometimes help can come from totally unexpected places , one thing that I have learn't is that if you don't ask you don't get.
BFN
JULIE X
NEVER LAUGH AT A LIVE DRAGON |
User
Well done Allison.
Sue, fill the form as at the worse Dad is, if you need help filling in the form then get AgeUK to help, but remember it is based on the worst that Dad can be, ie. the more help he needs.
Chris.
Edited by member 03 Mar 2015 at 23:02
| Reason: Not specified
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi
I don't know if anyone is a member of The Benenden but if they are I have found them very helpful. When Tony had his first lot of RT (13 years ago) They paid for his petrol to get to the hospital for treatment each day, this was a really big help because it was an 87 mile round trip, I got in touch with them today to see if they would be able to help again as he is going to have 5 weeks of RT so another 5 weeks of 87 mile round trips and they have agreed to help again and have also said after the treatment they will pay up to £500 for a mini break in England to help with recuperation. They do not help with any treatment for Cancer but I did not expect the rest of the help.
barbara x
Show Most Thanked Posts
User
Age Uk will often help with the filling in of these forms. They have helped my parents and mother-in-law.
Paul
Stay Calm And Carry On. |
User
Good idea Allison and I was thinking this morning that there are quite a few new members recently who may be unaware of their right to free prescriptions.
Basically, anyone diagnosed with cancer can get an exemption certificate from their GP which entitles them to free prescriptions. The exemption certificate lasts for 5 years. In addition, anyone undergoing treatment for cancer or treatment for the side effects of cancer treatment is also entitled to an exemption certificate.
So it applies to
a) the newly diagnosed man
b) the man who is on active surveillance
c) the man who has opted for radical treatment
d) the man who is incontinent, has bowel problems or is having treatment for ED as a result of surgery or RT
e) the man with advanced disease and on hormone treatment, chemo, etc
f) the man with clinical depression as a result of diagnosis if he is being treated for the depression
g) the man in end stage
After 5 years, the man can apply for a renewal and as long as b, d, e, f or g apply he is likely to get another exemption certificate for another 5 years. The exception would be (c) as some lucky guy that has radical treatment, gets 5 years of undetectable PSA, isn't depressed, is continent and needs no Viagra or similar will no longer meet any of the criteria. If in the future he has a recurrence, he could then reapply at that point. We will be applying for John's to be renewed any time soon so we'll see how that goes!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Alan and I have benefitted enormously through the fully funded NHS Continuing Heathcare scheme. It is a package of care designed around both patient and carer. It is one benefit for which you are not able to apply personally .. the application form is divided into some 12 sections and completion is undertaken by District Nurses, Palliative Care Nurses, or Macmillan Nurses - as a general rule. Information is gathered from all members of your local care team .. plus the patient and carer.
Full details of the scheme can be found here on the NHS website ... http://www.nhs.uk/chq/Pages/2392.aspx?CategoryID=68
This benefit is totally different and separate from anything which may be offered via Social Services .. their services are generally means tested.
I can only tell you about the sort of help we get .. but it will give you a general idea. Alan has a nurse in 5 days a week to shower and dress him. I have 4 hours per week 'respite' with a 'care-sitter' staying with Alan, allowing me to get to the bank, shops, etc., for essentials. In view of my own limitations I have 2 hours per week help in the home (housework, etc). Two nights a week we have a 'sleep-in' carer who is responsible for Alan's needs between 10pm and 7am giving me a chance to have two nights a week undisturbed sleep. We were recently informed that Alan qualifes for 6 separate weeks per 12 month period to be cared for in a nursing/care home which is in the local area - a break for both of us every 8 weeks or so.
Assessment is officially every 12 weeks, I think, and is undertaken by Alan's PCN who sees him every three weeks, so she is always fully up to date with his needs.
Obviously the help we now get is very much appreciated and I hope this insight will be of help to others.
Cath
User
Council Tax Reduction:
If you need to carry out alterations to your house for the benefit of a disabled person, you can apply for a reduction in Council Tax. The criteria is that significant changes have to be made to a bathroom .. bedroom .. or kitchen to accommodate the needs of the disabled person.
In our case we had alterations made to two bathrooms to enlarge shower cubicle in one and remove a bath in favour of large shower cubicle in the other, so that a chair could be placed inside and there would still be enough room for a second person to help with the showering. A council representative will call and inspect the work. For us it resulted in our house being technically 'downgraded' from Band D to Band C for the length of Alan's life. They re-issue an ongoing confirmation form about every 12 months which has to be signed and returned. This is a financial gain to us of something just short of £200 per annum. Every little helps!
Cath
User
VAT Exemption Scheme:
If you are buying goods and services for a disabled person then some these may qualify for zero vat. A short form normally has to be completed confirming the patient's conditions, and a signed statement of truth.
More details here ... http://www.hmrc.gov.uk/vat/sectors/consumers/disabled.htm#2
In our own case, all the supplies bought for one of the bathroom conversion jobs were obtained under this scheme saving us about £1000 on the job. Not to be sneezed at!
Cath
User
First of all I would like to say hello to friends from the old forum. I have not been on for a few months.
I have a possible problem with Attendance Allowance renewal.
When Dad was originally diagnosed 3 years ago with advanced pca with mets his GP provided the form so we could apply under special rules. We had been told it was terminal but three years on he is still here and doing well due to Prostap injections. Spoke to his GP on the phone today about the renewal and she said it cant be done under special rules this time as DWP class terminal as somebody not expected to live longer than 6 months so I have to complete the form in the ordinary way.
The problem is that sometimes he needs more help than others. Sometimes he can manage things on his own like shopping, getting in and out of the bath, cooking etc but then other times he gets very breathless and extremely tired due to anaemia etc and finds it difficult to do much at all. On looking at the questions on the form it is looking a bit doubtful that he will get the AA renewed if he doesnt need my help all the time. I have been his carer for the last 3 years and if he loses his AA i will also lose my CA which means that I would then have to work and would not be there for him when he does need me. I could not believe it when the GP told me that her own father had been refused AA even thought he has advanced lung cancer. I know people who are much more able who receive it, I don't understand it at all.
I would be interested to know if other people with pca have been successful in obtaining this benefit.
User
There is also carers allowance, this is payable to a primary carer if they look after someone for more than x hours a week (not sure of the current figure) It will not be paid if the carer earns more than about 100 pounds a week but this does not include pensions. There is no means testing of the person you care for. It is taxable.
Many of these sound more complex to apply for than they need to but Macmillan, Maggies and your local hospice will all have a specialist benefits helpline. Our Hospice did everything for me including rushing though his fast track forms for DLA and Motability so that he got them before his 65th birthday. Once a man is older than 65 he cannot qaulify for the same benefits. They also helped me to get everything I was entitled to in terms of widows benefits when Mick died.
Great Idea Allison
xxx
Mo
User
I have found Age UK to be excellent at helping to fill in these forms. Try contacting your local office to see if they can offer any help.
Paul
Stay Calm And Carry On. |
User
Brilliant Idea for a thread Allison, so many people need help and advice for how and where to go for financial help .When we were first diagnosed I was like a rabbit caught in the headlights , we had no idea that there was so much help out there but you need to know where to ask .
A good friend has health problems not PCA related but she has difficulty walking and with stairs etc she and her ex husband where in the RAF many years ago and the SAAFA have been brilliant fitting a stair lift and downstairs washroom so sometimes help can come from totally unexpected places , one thing that I have learn't is that if you don't ask you don't get.
BFN
JULIE X
NEVER LAUGH AT A LIVE DRAGON |
User
Well done Allison.
Sue, fill the form as at the worse Dad is, if you need help filling in the form then get AgeUK to help, but remember it is based on the worst that Dad can be, ie. the more help he needs.
Chris.
Edited by member 03 Mar 2015 at 23:02
| Reason: Not specified
User
What a useful thread, really helpful for all of us on here plus interesting if applies to other members of the family with different illnesses.
Thank you everyone.
Alison
User
I cannot for the life of me see why a GP cannot reissue a DS1500 form, it doesn't mean that someone will die within six months but that if they did then it would not be unexpected. The form is valid for three years, we are on our second and I hope to get a third. I think your GP is being very rigid. I'm sorry their own experience was so bad but that's no excuse for not helping your dad.
If they can't be persuaded then please ask Macmillan to help with the form or age UK. You really do have to concentrate on the bad days, it's horrible but that's all you can do. Be honest about dad's limitations. We even said that walking outside when possible was something My OH liked to do as it was so good for his physical and mental health because he felt bad that sometimes he feels a bit better!
I hope that you get the right help with this form, say lots of things on it about how much help he needs etc if you fill it in yourself. Good luck with it.
Love Allison xxx
User
this is one of the best threads on here, it should be posted at the start
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Just found this thread after being on this site for 18months ,thankyou nidge for bringing it to the forefront again ,Gary already gets the free prescriptions but at his app today will ask about any other ones that we may be entitled to .
Best wishes to all
Debby
Edited by member 20 Jun 2017 at 08:21
| Reason: Not specified
User
I have just contacted my gp to get the form for attendance allowance his answer was that I needed to get it from Tony's specialist, we are not seeing him for about another 6 weeks so the receptionist has sent the gp the answer that we wont be seeing specialist for ages, I have to phone back tomorrow to see if he will give me the form. He only has to look at Tony's medical record to see he in on chemo, his psa is rising, he has ckd5 (end stage renal disease) to see that it wouldn't be unexpected if Tony died in the next 6 months (although hopefully he has a lot longer) so annoying,
barbara
User
Hi Essexbabe,
Oh's macmillan urology nurse completed the ds1500 and sent it to DWP, do you have a key workers/specialist nurse allocated to you through the urology team?
Due to a cock up at oh's diagnosis appointment, the urology nurse did not have ohs paperwork for 6 months!
I was desperate for acknowledgment of how in need he was that I printed the PIP form off myself and completed it myself, at the time oh was really suffering from chemo side effects and his worst days were truly awful. Due to bone pain and peripheral neuropathy he could no longer operate the clutch in our car.
The DWP then asked for details from the urology dept and this is when the specialist nurse discovered oh's ds1500 had not been issued, nor had anyone from their team been in contact with us.The nurse then completed the form and oh now receives higher rate pip.
The protocol should have been:
Formal diagnosis appointment, specialist cancer nurse present.
Diagnosis of incurable stage 4 (or like the others have said, a diagnosis whereby a death within 6 months would not be unexpected.)completion by nurse of ds1500 which starts the ball rolling.
I hope this helps
Xx
User
Hello Kentish
Tony does not have a specialist cancer nurse or a macmillan nurse, I went into the macmillan help shop in the hospital and there was only a volunteer in there that did not even no what a ds1500 was. Thanks for your advice though, I have to phone the doctor later today, if no joy I will go to a larger macmillan centre to see if they can help.
regards barbara x
User
well, phone call from Drs Tony does not meet the criteria apparently, so frustrating.
barbara
User
Because of his age or because they don't believe he has less than 6 months to live?
I don't think volunteers in a shop would usually be expected to know this stuff; your local hospice or the nurse specialist at his hospital are probably the best people to advise you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Lyn
it wasn't a shop it was the macmillan bit in the hospital, apparently they usually have an ex cancer nurse in there but she is on holiday, I wasn't having a go about the volunteer she was lovely I am just frustrated about the drs. Tony has ckd 5 as well as the cancer, the treatment could kill him although hopefully not, the form to fill in for attendance allowance is a nightmare, I tried last year and was told he doesn't need enough help, I would like to see them doing it.numerous hospital appts, trying to sort his medicines with the drs and pharmacy, making sure he is doing everything he should. sorry for the rant just need to let it out.
regards barbara
User
https://www.gov.uk/pip/how-to-claim
Hi Essexbabe,
You sound exactly like I did last year, so frustrated.
Eventually the macmillan benefits lady emailed the PIP descriptors to me and I then rang the number on the above link. I printed out the descriptors first and went through them carefully and prepared my answers, I get really flustered on the phone and these are awful questions to have to answer. My husband gave his pemission at the beginning of the call and then I went in another room to give all the details over the phone.
I have the descriptors on a word document but I don't know how to attach them here. Can anyone help with how I can send to Essexbabe?
When you've answered all the questions they then send the forms out to you that have the descriptors on them. I didn't have a ds1500 at this point (because the hospital lost his paperwork for the specialist nurse to do this but that's another story)and the DWP accepted oh for the higher rate without an in person assessment. A lovely Scottish chap called and asked me a couple of questions and my answers negated the necessity for oh to go for another inspection!
The process should be easy if you have a nurse doing the paperwork but if you don't, it feels like no one believes you and it's horrible feeling you have to justify how sick someone is 😕
It's a long phone call, give yourself at least 1hr and have all of the addresses and contact details in front of you.
Hopefully some one will be able to tell me how to send you a document, in the meantime I'll look to see if I can find them on the Web and add a link.
Xx
User
User
I've just read that this is only up to 64 years of age, I'm sorry, I should have checked that first. I didn't realise there were different benefits for different ages.xx
User
ha! I imagined it being a shop with crocheted toilet roll covers and second hand books!
So did they say he doesn’t qualify because of his age or because he is likely to live more than 6 months?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks Kentish for trying to help x
Hi Lyn
I realised that's what you thought lol x
the doctors surgery just said to Tony "you don't reach the criteria"
I wanted the ds1500 because i filled in the form for attendance allowance last year and it is so long and complicated i probably didnt put it in the right way, i am going to try to get to a bigger macmillan centre and see if they can help me fill the form in when it arrives or i might contact the oncologists secretary to see if i can get a ds1500 from there.
regards barbara
User
Well
I filled in the form for attendance allowance, put in all that Tony has wrong, how many times he gets up in the night, all the hosp appts that I have to attend with him, his end stage renal disease (ckd5) put his chemo, all the tablets and so on and so on sent the form back after it had taken me a week to fill it all in and today found out he has actually got the higher rate of attendance allowance, could not believe it really thought they would turn him down again. happy days. thanks for all your help, made sure I filled it in about his worst days by keeping a diary for a week.
regard barbara xxx
User
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi
I don't know if anyone is a member of The Benenden but if they are I have found them very helpful. When Tony had his first lot of RT (13 years ago) They paid for his petrol to get to the hospital for treatment each day, this was a really big help because it was an 87 mile round trip, I got in touch with them today to see if they would be able to help again as he is going to have 5 weeks of RT so another 5 weeks of 87 mile round trips and they have agreed to help again and have also said after the treatment they will pay up to £500 for a mini break in England to help with recuperation. They do not help with any treatment for Cancer but I did not expect the rest of the help.
barbara x
User
Got turned down by local council for a Blue Badge. Failed Q1 How far can you walk?
Guy at the Council asked me where I'd parked and it was half a mile away.
Guess Stage 4 Incurable Cancer isn't enough for our Local Council.😖
User
Allison
My cancer is incurable and I've been receiving PIP for nearly 3 years and now being requested to renew. Will I still get it do you think?
User
Hi all,
I have noticed that you have all been talking about benefits, my question is will I be able to claim any of these whilst I am still working or do I have to wait until the PC advances further until I am unable to work.
Thanks chris
User
I asked, recently, AGEUK to help me fill in a Blue Badge Form, received badge within 3 weeks without any queries. And in the past we had Sight Concern to help us both fill in AA forms, and we both get the higher amount, so it IS worth getting a ‘Regular form filler’ for help.
Chris.
It might ask ‘how far can you walk’ but how often do you have to stop and rest on that walk!
User
Hi Exbus / Nathaniel
Thanks for your reply, how did you get round the form because to start with although we are going through treatment ie. Radiotherapy, hormone injections ECT but we are still able to do things and I am not sure what to say in the form because at present I will most probably be refused.
You advice would be appreciated, private message me if you prefer.
Chris
Edited by member 20 Mar 2020 at 16:15
| Reason: Not specified
User
Hello Chris, with the AA form, firstly my wife is registered Sight Impaired, which is why the lady was here, after filling in my wife’s form then asked my wife what help she gives me, as my wife said I had PCa, then asked a few questions to us both, filled the form in, we read it through and sent it off, remember it must be on written as if it was your worst day.
With the Blue Badge Form done at AGE UK, we walked in with my tri-Walker, I gave her copies of my latest CT and Bone Scan results, copy of my AA letter, says how much they’re paying me and a copy of my Continence letter, which says I’m being given Pads, then asked me how we got to her office, I told her we walked but I had to stop and sit on my walker, she then went ahead and filled the form in.
Hope that helps.
Ask for copies of all you have done, the letter sent to your GP is a start, I keep records of everything, I’m waiting for CD’s of my CT and Bone Scans at the moment, they’re in the post somewhere.
Chris.
Jasper, the office was half a mile from car park, how many times did you have to stop.
Edited by member 20 Mar 2020 at 16:33
| Reason: Forgot something and answered Jasper
User
Chris
I'm still fortunate I can walk long distances.
I applied for the blue badge because a guy at the Cancer support group said if I'm stage 4 I'd get one.
He was wrong.
User
Thank you for all your advice, very much appreciated.
Chris